Thursday, April 3, 2008

I thought it might be helpful and/or interesting for some of you to learn a bit more about cortical vision impairment. Our OT left an article yesterday about CVI and there were some things in the article that really seemed to make sense in regards to why Elijah does the things he does. While it’s hard for us to think that he seems to have some sort of impairment when it comes to his sight, it’s comforting to think that it can improve (and it has already). I’ll take some quotes from the article and then give my own commentary…

Presently, Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. This would explain why the pediatric optometrist hasn’t found anything wrong when we have gone in for appointments; the problem is in the brain, not the eyes. I am a bit annoyed that she didn’t even mention the possibility of CVI, though. From what I’ve read, CVI in children with brain damage is very common. I wouldn’t want a careless diagnosis, but a bit of a warning would’ve been nice. Visual regard and reaching (in the child with motor capabilities) toward objects is absent. Hmm…This has been my greatest concern because it seems that this is the area in which Elijah is the furthest behind. He should’ve started reaching for things around three to four months. The good news is that I have been seeing drastic improvements in him lately. He’s opening his hands a lot more and grabbing things. Even though it’s typically not on purpose, he’s getting there. His sight has also seemed to improve a lot lately, which would make sense.

Seizures can cause CVI…Common causes of CVI in infants and young children include hypoxic ischemic encephalopathy (HIE) Yep, this is what happened to Elijah. HIE, by the way, is a fancy term for oxygen deprivation. HIE would be the official diagnosis for what happened at his birth, but no one has ever told us this. It’s been frustrating that no one has ever really told us anything in terms of a diagnosis. I guess I’d rather have it that way than too many diagnoses, though.

The most common CVI symptoms are:  Abnormal light response - light gazing OR photophobia Wow, yes. Elijah is obsessed with lights. He does seem to be getting better with this too. He’ll sometimes break his own gaze and I’ve even had him turn his eyes to me (and away from a light) when I said his name. That is definitely progress.

 Blunted or avoidant social gaze  Brief fixations, intermittent following  Poor visual acuity  Visual field loss - generalized constriction, inferior altitudinal, hemianopic defect Elijah simply doesn’t look at things like you would expect him to. He sometimes avoids looking at people and doesn’t pay attention to toys that are noisy or flashy. He’ll get into these modes where he seems to ignore everything around him and at other times he seems very aware about what is going on around him.

Parents are most disturbed by the child's lack of social gaze and direct eye contact. Active avoidance of or withdrawal from unfamiliar visual stimulation, including people's faces, is frequently reported. This is certainly the case for Elijah, as he seems to avoid making eye contact. People will try to get his attention and he will turn his head the other way. It seems that he does this especially with people he doesn’t know well. It also seems like the more a person tries to get his attention, the more he looks away. He does actively pay attention to Andy and me. He has been improving in his response to stimuli and is more likely to look at people now, even those he’s never met before. He’s always ready and willing to give me a smile and has become so much more interactive lately. I’ll enter the room and he’ll actually look at me, which is great.

Partial recovery of vision in many children with CVI occurs. Improvements are seen in visual acuity, orienting to peripheral stimuli, attention to and reaching for objects and for social gaze. Yay! This is the good news. He can and is getting better. As with everything involved with Elijah, I have to remind myself…Just because he is not doing something now, doesn’t mean he never will. He will get there.

In most children with CVI, acuity does not reach normal levels. This is the bad news. I did not like reading this sentence. I remain optimistic, however, that Elijah will be the exception in this area as well. He has already done much better, I believe, than expected. With prayer, God’s intervention, and a lot of hard work I really believe that Elijah can get there.

Overall, a CVI diagnosis isn’t the end of the world. In some ways it’s nice to have a name to attribute to his behavior. He hasn’t officially been given this diagnosis, but intuitively I believe he will at some point. I hope this article and my comments have shed some light on what Elijah might be dealing with…I know it helped me understand it a bit better. The great news is that he is improving and I can only hope and believe that he will continue. Keep those prayers coming for our little dude. God has certainly been listening. :)

Link to the article: http://www.childrenshospital.org/az/Site2100/mainpageS2100P0.html

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About Elijahland

This is a story of overcoming the odds, putting trust in God, and the miracle of prayer. Our son, Elijah, was born in August of 2007. As a result of the oxygen deprivation that occured during his birth he spent his first three (agonizing) weeks in the hospital. When he was seven days old, we were told that Elijah had "severe brain damage" on both sides of his brain. At that moment we entered Elijahland and we've been here ever since. We're learning to live with the diagnoses Elijah has started to accumulate, but mostly we're grateful that God chose us to be his parents. It is truly a privilege to live in Elijahland with our handsome boy. Thanks for visiting.